LDN (Low-Dose Naltrexone) for Hyperacusis Ear Pain?

Hello you all.

I have extreme pain hyperacusis, and reactive tinnitus.

Maybe the culprit of both were antibiotics, i guess I'll never know, but since the onset literally any med I try at all spikes my tinnitus, including benzos... Also Carbamazepine gave me a hyperacusis setback.

Does anyone have any idea why it happens?

Also, has anyone tried LDN for the hyperacusis pain?

 

I haven't tried it. But where did you find that LDN might be helpful for pain hyperacusis? I have only read that anti-seizure drugs might be helpful. But they come with heavy side effects. So probably not many have tried it. @DebInAustralia said two here had success with Keppra.

 

If your hyperacusis is an autoimmune issue, LDN could help, as it is an immune modulator at low doses (0.5mg - 4mg)

LDN is used for pain states.

IMO, it couldn't hurt to try it.

Dr. Dirk de Ridder recommends LDN for tinnitus.

However, I know of one guy on here, who tried it, but didn't benefit from it.

I know of 2 members who found Keppra helpful for hyperacusis.

 

I have tried both LDN and Keppra for pain hyperacusis. In my case they did not help.

 

Have you found any drug that has helped you with pain hyperacusis?

 

Clonazepam helps me a good bit. For all the usual reasons discussed on Tinnitus Talk regarding benzos I limit it to the bare minimum.

 

@xyz did you try the LDN or find something else?

 

No, I am currently just taking NAC & Magnesium and am constantly wearing hearing protection. And hope things improve on their own.

 

Did you ever try the LDN? If so, how did you get on?

 

Just started taking LDN. Let’s see if it works. So far my tinnitus is spiked about 20 percent. Ear pain is 10% better. Gonna stay on it for a few weeks.

 

Hope you get a decent result, man. Good luck.

 

I am going to try 5 mg. How many mg are you taking?

 

1.5 mg a day. Haven’t taken it yet today. I had a nasty spike yesterday. Not sure if I should continue.

 

If I were you, I would not continue.

 

Yep I stopped. Hopefully it didn’t cause any permanent effects.

 

I started LDN in mid March for ME/CFS. I have noticed a big improvement with all symptoms!

I had settled with 0.1mg taken at night. I noticed an increase in tinnitus when I first began, but it went down.

I just increased to 0.2mg and have again noticed an increase in tinnitus. Hoping it settles down again. I don’t want to stop with such improvements, but don’t want continual increase in tinnitus.

Any input anyone? Thanks!

 

Did it help your hyperacusis? Ok, I might try again! Your dose is very small. Mine was 1.5 mg. My new dose is 0.5 mg. My friend said you have to keep taking it even after the spike.

 

Those choices are really tough lol.

 

I know. I’m seriously going to wait until there’s at least a tinnitus treatment before I start rolling the dice. 10 years later hahaha. But seriously I know I would probably feel better on Naltrexone, Cymbalta, benzos, but no way am I sitting in silence with extreme tinnitus, nope. Not happening.

 

How are you doing these days man?

 

How's your tinnitus going now? I hope you're doing ok...

 

I was wondering if anyone had anything new to report on LDN for hyperacusis?

 

I started with 0.5 mg. I’ve been upping 0.5 mg every week to prevent nasty spikes. Up to 3.5 mg now. Going to try and get to 4.5 mg and see what happens. LDN does make my body feel less pain in general. If I’m exposed to trigger noises, extreme pain doesn’t last as long. It definitely takes the edge off extreme pain. I still must be in complete silence to manage though. Going to keep taking it for a while and see what happens.

 

Happy to hear it's helping you a bit. Hope you keep improving man, sending good vibes your way.

 

Has LDN had any effect on your tinnitus? I have a bottle of LDN in my closet, I'm just too paranoid to try it, mostly because of the anecdotes on here.

 

LDN spiked my tinnitus in the beginning. I had to start on a small dose at 0.5 mg and work it up every week. Once I got to 1.5 mg, it stopped spiking. If you’re taking it for tinnitus, apparently normal dosage is better, low dose is more for chronic pain so if noxacusis is your problem, try it. Don’t be scared of it; it’s a very safe drug.

 

Hey, are you still taking Naltrexone since last year? You say you continue to struggle with hyperacusis, how has it improved since then?

 

I’m still on Naltrexone, yes. It helps the pain like 10%. I’m also on CBD, have go ice my ear twice a day and stick garlic oil in it. Double protection on my bad ear 24/7.

Nah, mine doesn’t really improve, it only gets worse. I’ve been in silence for about 6 months and I can now tap a fork with double protection but I would not call that much improvement, my pain just isn’t as severe from super low level noise. Anything like really high pitch still kills me through double protection. I will still get severe long lasting pain from most sounds. One bad sound can cause a setback. I have to put on double protection just leave my room any time during the day. I always have some kind of protection on my bad ear. I’m getting smarter not to trust people or my luck so just going to keep doing this for a while and see what happens. When in my room, I don’t have to wear protection for my right ear, it’s more forgiving.

 

I've been reading about this and apparently you can avoid some of the initial side effects of LDN by starting dosing around 6 mg. Some points from this document:

"Many patients with fibromyalgia (and possibly ME) in a Facebook group have started directly at a dose of 6 to 4.5 mg and report good, and for many, immediate effects. Those who started at this dose experienced little or no symptom exacerbation, which some patients can do when they start at a low dose (≤1,5 mg) and then increase the dose over time, which is the traditional way of dosing. 4.5 mg was the starting dose for clinical studies on fibromyalgia at Stanford University."

It goes on to say:

• At a low dose (1.5 mg) "stimulation and stabilization" is strong and immune suppression is hardly present. When immune suppression is weak and the immune system is stimulated, the autoimmune reactions are enhanced and many are experiencing symptom aggravation until stabilization occurs.
  
  
• At 3-4.5 mg the "stimulation and stabilization" action is at maximum strength and the immune suppression is weaker. This explains why starting at a 3 mg dose may give a tough startup sometimes.
  
  
• At high doses (6 mg) the immune suppression action is strong and "stimulation and stabilization" is weaker. Therefore symptom aggravation will likely be less but your immune system will still be gently stimulated and the stabilization of the immune system will be in place gradually.